Adam Kalinowski, President of Dystonia Europe, discusses life with a rare disease and his #BrainLifeGoals

I am Adam Kalinowski and I am the president of Dystonia Europe – a Pan-European umbrella organization for dystonia national associations. I am also the secretary of the board of the Polish Dystonia Association. I am 35 years old and have an active life, I am a patient advocate, I learn computer graphics and photography, I travel a lot, trek in the mountains and surf.

Sounds good, right?

That all sounds good and easy. But it wasn’t easy. It’s not easy to do all these things with a neurological disorder.

But it wasn’t easy. It’s not easy to do all these things with a neurological disorder.

The cervical dystonia I’m suffering from is a neurological disease. Dystonia is a rare disorder. I often explain to my friends and other people what’s wrong witch me. Medical theories that can be found on the internet and books do not totally reflect what is happening to my body. I always explain to these people that my brain constantly sends a signal to the muscles in my neck to turn my head to the left without my intention and control. It’s hard to imagine, but try to turn your head to the left and hold it with your hand. Try to straighten your head, but your hand won’t let you do it. How do you feel? I feel it every day, every hour and every second for almost half of my life.

I lived in fear and shame, I avoided public places and people.

I have been suffering from dystonia for many years. I lived in fear and shame, I avoided public places and people. Paradoxically, when my condition worsened 2 years ago, my approach to life began to change for the better.

There is no cure for dystonia, the most effective treatment is botulinum toxin injections. Unfortunately, after 8 years of injections, my body developed toxin antibodies and I had no results from treatment any more. My head has turned all the way to the left. Even more, my muscles wanted to turn my head even more than to the maximum. It caused severe pain.
I stopped driving, lost my job, began to isolate myself even more than before. At that time, I felt lonely and misunderstood by society. That’s why I decided to find people like me. I founded an online support group for people with dystonia.
The group grew very quickly and it turned out that it was very needed for other patients whom even the family did not understand.
After a short time, I began to get more and more involved in the work of spreading awareness about dystonia and providing information to patients. Dystonia Europe and the Polish association noticed my activity and this is how the cooperation began. I started attending EFNA’s workshops and Dystonia Europe meetings. My confidence grew and I realized that isolating yourself is the worst thing you can do! It was a slow process, but I was less and less ashamed of what I looked like. I don’t feel lonely anymore.

Adam at Lahinch, Ireland, where he loves to surf.

At the same time, I started to get a new type of toxin that reduced muscle pain and tension. After two years on the board of Dystonia Europe, I was elected the president of this organisation. My support group now has over 600 members and its one big family. I am open with people and now I have a new problem – I talk too much! Totally the opposite to how it was during all previous years of my illness.

It’s still not perfect, my symptoms still affect my life. I lose a lot of energy fighting my neck and it is harder for me to focus on my tasks. Simple activities like brushing my teeth, crossing the street or using a spoon are still not easy. Reaching goals requires a lot of energy and mental strength from me.

Stigma in brain diseases in society is still high. Does he have some brain disease? Brain = mental problems, simple! No, it’s not that simple and it’s not always true! That’s why I know that we need to raise public awareness about neurological diseases! Imagine a blind date with a guy who has an unnaturally twisted head? I don’t think I have to explain how I feel in such situations. It’s easy to say “don’t worry about it”. It’s easy to say, but to make it happen I have to work hard on my mind because the problem is not only in societal stigma but also in the barriers we put in our own heads.

I still have bad days but I don’t give up, I know that tomorrow is a new day and I have to work harder than others but tomorrow will be better and I will be even stronger!

Adam has shared this article in support of EFNA’s #BrainLifeGoals campaign. EFNA launched the #BrainLifeGoals campaign earlier this year with the aim of raising awareness of the needs and goals of people with brain diseases. Patient advocates are encouraged to participate in the campaign by sharing their own goals on social media alongside the #BrainLifeGoals hashtag, or by sending their stories to us here.

September is Dystonia Awareness Month. You can find out more about dystonia by visiting the Dystonia Europe website.